We are the Remillet family – Joe, Desiree and Maddux.
Our story is filled with some setbacks but we would like to focus on the triumphs. We are sharing our journey in hopes that we can help families that may be struggling with something we have faced and overcome.
Our son, Maddux, has a dual diagnosis of Spina Bifida and Achondroplasia Dwarfism (and others we will discuss here). He is truly a one-of-one, who continues to teach us all how to laugh, love and learn. His positive energy continues to guide our family and we hope to help others as well.
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We are the Remillet family – Joe, Desiree and Maddux.
Our story is filled with some setbacks but we would like to focus on the triumphs. We are sharing our journey in hopes that we can help families that may be struggling with something we have faced and overcome.
Our son, Maddux, has a dual diagnosis of Spina Bifida and Achondroplasia Dwarfism (and others we will discuss here). He is truly a one-of-one, who continues to teach us all how to laugh, love and learn. His positive energy continues to guide our family and we hope to help others as well.
Live Episode: Maddux will need brain surgery (#14) this week
What Am I Thankful For
55 minutes 43 seconds
3 years ago
Live Episode: Maddux will need brain surgery (#14) this week
Update on how our 2022 has been going
Why we haven't been recording
Update on Maddux's school year
Professional Updates
Brain Surgery #14
Diagnosis from routine MRI
Typical signs of shunt failure
Famous sports figures who wore #14 (https://www.ranker.com/list/best-athletes-who-wore-14/ranker-sports)
Our brain surgery playbook
Quarantine leading up to surgery
Have to shave his head bald
Bowel management
Stay at a nearby hotel
Spring Break - Hawaii Trip
Trouble with COVID Protocols
Flying with special accommodations
Beach photoshoot
Hiking Pill Box (http://www.lanikaipillbox.com/)
Rental Equipment (https://www.babyquip.com/)
Maddux's other accomplishments
School year awards
Challenger Little League Baseball
Abilities Expo
Celebrity Encounters (https://www.instagram.com/whatamithankfulfor/)
Maddux was in a children's book (https://theablefables.com/product/garys-gigantic-dream/)
Complete his 5th 5K this year
Struggles with Medical Insurance
Lagging authorizations
Rising Co-pays
Outright denials of things that he needs
Leads to hours and follow-up calls and frustration
How do other families navigate this?
Check out the blog: https://thankfulforpod.wpcomstaging.com/home/
What Am I Thankful For
We are the Remillet family – Joe, Desiree and Maddux.
Our story is filled with some setbacks but we would like to focus on the triumphs. We are sharing our journey in hopes that we can help families that may be struggling with something we have faced and overcome.
Our son, Maddux, has a dual diagnosis of Spina Bifida and Achondroplasia Dwarfism (and others we will discuss here). He is truly a one-of-one, who continues to teach us all how to laugh, love and learn. His positive energy continues to guide our family and we hope to help others as well.
